Diagnosis to now

Tuesday, December 8, 2015

Why do I campaign hard with advocacy, awareness and education on asbestos issues?

Why do I campaign hard with advocacy, awareness and education on asbestos issues plus give support to those living with an ARD (asbestos related disease including mesothelioma) and to their families including those who left to pick up the pieces when their loved one dies from an ARD?

The simple answer is because I care. I am not angry because it would stew inside me and myself, in turn, would shrivel up and die of anger at asbestos greed. I care - no one should ever have to go through the brutal pain and suffering as a victim, and no one should ever have to watch someone they love go through this either. It is a preventable disease/cancer caused by asbestos greed - not by us!
My darling dad died of pleural mesothelioma (working in the building industry) in 1985 aged 54 years. He lasted just a few months and in that time he was in so much pain, agony and on 24/7 oxygen - all because he went to work and did his job well! Since then I have been aware of the deadly dangers of asbestos fibres and had spoken out to warn others working with asbestos products of the dangers. Then when I was finally diagnosed in 2003 with peritoneal mesothelioma and later in 2009 with pleural mesothelioma the crusader in me came to the forefront! How dare asbestos greed continues to take innocent lives and wreck beautiful families! Crusader fights for cancer drug - Star Weekly Newspaper 7 Dec 2015

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A Gisborne woman who has spent 12 years battling mesothelioma is urging the federal government to add a revolutionary, but costly, medication to the pharmaceutical benefits scheme.

Despite her ill health, Louise Williams has spent many years fighting on behalf of others diagnosed with lung cancer caused by exposure to asbestos.

Mrs Williams said that before starting a new medication, Keytruda, in April this year, she couldn’t get out of bed.

In 1985, her father, who worked in the building industry, was diagnosed with pleural mesothelioma. He died six months later aged 54.

In 2003, Mrs Williams, then 47, was diagnosed with peritoneal mesothelioma. In 2009, it became pleural mesothelioma. She has had large tumours removed, and she underwent many courses of chemotherapy before starting on Keytruda.

Mrs Williams said her life had been transformed after 12 doses of the drug, which encourages the body’s immune system to fight tumours.

‘‘It doesn’t kick in immediately, but after the third dose my scan showed significantly reduced tumours and fluid,’’ she said.

‘‘After numbers four and five, I started to ease up the oxygen and was walking better and doing basic household things.

‘‘Between five and six I thought, well, what’s wrong with me?

‘‘My quality of life is back. I’m able to do everything I used to be able to do.’’

But Keytruda, which is listed on the PBS for melanoma but not for asbestos cancers, doesn’t come cheap.

Depending on body weight, a single dose can cost between $6000 and $11,000, and it must be administered every three weeks.

‘‘At the moment it’s usually prescribed at the end of life because it’s so expensive,’’ Mrs Williams said. ‘‘I believe once it’s on the PBS, oncologists will be able to try it earlier.’’

Keytruda is getting results with more than 20 different cancer varieties around the world.

‘‘With mesothelioma it’s showing a success rate of 60 to 70 per cent,’’ Mrs Williams said. “Chemotherapy is about 20 per cent. Everyone should have this option.’’

The efforts of Mrs Williams, who has spoken at several international conferences, were recently praised in Federal Parliament by McEwen MP Rob Mitchell.

‘‘I do not think I have met a person with such great inner strength and courage,’’ he said.

‘‘We will keep fighting to help her and hopefully other victims get the support and medication they need to help them lead full lives.’’

Mrs Williams, who hopes to present a 6000-signature petition to Health Minister Sussan Ley soon, said she believed victory was near.

‘‘We will get it done,’’ she said. ‘‘I know we will.’’

A spokesman for Ms Ley did not respond before deadline.

- See more at: http://www.starweekly.com.au/news/crusader-fights-for-cancer-drug-2/#sthash.kTAEQVy9.dpuf----------------------------------------------------------------------------------------------------------------------------------------------------
My campaign at the present moment is to get Keytruda fast tracked on to our PBS (Pharmaceutical Benefits Scheme) for each infusion will be free rather than the expensive costs at the moment. With Mesothelioma we do not have time to wait for the length of usual time it takes for a drug to be submitted and approved. With Keytruda already on the PBS for Melanoma the benefits are being shown already in many cases of Melanoma (the recent case being Jimmy Carter former President of USA.)
http://www.nbcnews.com/health/cancer/heres-look-keytruda-drug-jimmy-carter-says-made-his-tumors-n475561

Jimmy Carter credits the new cancer drug Keytruda for shrinking his brain tumors completely. It's one more possible victory for the newest class of cancer drugs that empower the immune system to fight off tumors. But cancer experts note that it's not at all clear that the drug itself is what shrank Carter's tumors. The former president was also treated with radiation to his brain and had a large tumor on his liver removed.

While most immune therapy drugs boost the immune system so that it can battle the cancer, Keytruda was the first drug to take a different approach that disrupts a trick tumors use to hide from immune cells. The Food and Drug Administration gave Keytruda accelerated approval in 2014 for patients, like Carter, whose melanoma has spread. It was on the basis of a big study that showed Keytruda could shrink the tumors of about a third of patients by as much as 90 percent.

Dr. Antoni Ribas of the University of California Los Angeles led that trial. Ribas says between 70 and 80 percent of the patients whose tumors shrank on Keytruda are still continuing to see their tumors shrink.

"That's what we expect from the immune system," he said.

Kathy Thomas of Torrance, California, was one of them. Thomas went from being in a wheelchair to walking three miles a day. She'd tried other immune therapies such as interleukin and a drug called Yervoy, but the side-effects made her sick.

And her cancer kept coming back. She started Keytruda in 2012 and felt the effects after two rounds of treatment.

"My hair is back and I am fat and happy," she said. Thomas celebrated her 60th birthday this year by traveling to South America and the Caribbean. She's not cured, but says tumors on her liver shrink after every new round of treatment with Keytruda.

"There needs to be a category of cancer patients like me. I am not cancer-free but I am surviving with it and basically doing well,"she said.

Lou Williams, a mesothelioma sufferer, is campaigning to get the lifesaving drug, Keytruda, on to the Pharmaceutical Benefits Scheme. Picture: Kylie Else Sunbury/Macedon Leader Newspaper 5 December 2015

LOU Williams has been fighting to stay alive for the past 13 years, with her body finally “shutting down” in April this year.

“I was on oxygen 24/7 and high doses of morphine for chronic bone pain,” the New Gisborne woman, 60, said.

“I was having blood transfusions to stay alive, although I was really receiving palliative care.”

Then Mrs Williams heard about Keytruda — an extremely expensive drug that had shown some promise treating mesothelioma (asbestos cancer).

“I didn’t want to die,” Mrs Williams said.

“So my husband and I decided we’d give it our best shot and paid for the treatment on our credit card.”

Doses of Keytruda cost between $6000 and $11,000, with several rounds of treatment needed before its effects can be assessed.

“At first, I was still shutting down and continuing to lose weight,” Mrs Williams said.

“Then after eight weeks and the third round of treatment, scans showed significant shrinking of my tumours.

“By number five I didn’t need oxygen anymore and by round six I was walking around by myself again.”

Mrs Williams continues to receive doses of the drug every three weeks and is determined to make Keytruda accessible to others suffering asbestos poisoning.

She was exposed to asbestos as a child in the ’70s playing with fibro sheeting offcuts. Her father died from pleural mesothelioma in 1985.

Mrs Williams’ change.org petition, which has so far attracted more than 5900 signatures, is calling for Federal Health Minister Sussan Ley to have the drug fast tracked on to the Pharmaceutical Benefits Scheme (PBS), bringing the cost down to around $36 per dose.

Keytruda was approved for use in Australia for the treatment of advanced melanoma in adults in April 2015.

Mrs Williams’ campaign has attracted international attention, drawing support from mesothelioma sufferers around the world, and has been backed by McEwen federal Labor MP Rob Mitchell, who spoke on the issue in Parliament last month.

“(Keytruda) is well out of the price range of most people,” Mr Mitchell said.

“That is why we have been working with Lou to encourage the pharmaceutical company that makes Keytruda to apply to the Therapeutic Goods Administration (TGA) and the PBAC to have the medication listed. There is no time to waste.”

A spokeswoman for Keytruda’s manufacturer, Merck Sharp & Dohme (Australia) Pty Ltd, said rare cancers were difficult to research due to fewer people enrolling in clinical trials and this could delay applications for registration and reimbursement.

“The recent Review of Medicines and Medical Devices includes recommendations that could accelerate the regulatory approval of medicines, including medicines to treat rare cancers,” she said.

“MSD is fully supportive of any policy changes that would improve access to treatments for rare cancers.”

A Federal Department of Health spokesman said it would be improper for the Minister to comment on the merits of an application that first needs to go through an independent scientific assessment process.

He said the TGA and the PBAC would accept a submission to extend the TGA registration and the PBS listing of Keytruda at any time, but sponsors cannot be compelled to apply for expansions of the scope of existing TGA registration and PBS listings.

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Lou's comments: I am just one of many global warriors who in unity help to make a difference.

PGARD (Parliamentary Government Asbestos Related Diseases Board members Senator Lisa Singh and Senator Russell Broadbent had a meeting with our Health Minister, Hon Sussan Ley recently to talk about Keytruda, my campaign and fast tracking it onto the PBS. A successful meeting and the next step is for me to meet with the Health Minister to present the petition with over 6,000 signatures. This petition is not about generating numbers of signatures/supporters it is about the 6,000 genuine people who passionately want to see Keytruda put on the PBS for Mesothelioma and eventually the 29 other rare cancers it is showing promise with.

Enough of talk - we need action as no one with Mesothelioma can afford to wait!